Autism ≠ Developmental Delay

There were few things that led us more astray than the idea of autism being a developmental delay. Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan. (This post is not about Stanley Greenspan or his method. His name is brought up only because of the video that inspired this post.)

Watching that video last night was brutal. The private hell of regret is a cruel place to linger. Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.” In typical Emma-fashion she generously and compassionately reminded me that it was not all an unmitigated hell. Unable to communicate her complex and insightful thoughts with spoken language, she languished for years in an abyss of being constantly underestimated and misunderstood. Because people assumed she spoke what she intended and meant, she was penalized for the words she managed to utter. “Do you want to go fast or slow?” “Do you want to stop or go?” “Do you want to open the door or close it?”

Again and again the video shows us making assumptions about her actions. We assume she has no interest in engaging. We assume she doesn’t want to spend time with us. We assume she is “in her own world.” We make assumptions and we behave according to those mistaken beliefs. We believed each word was a milestone, paving the way for more language acquisition. We believed it made sense. Lay the foundation, create a strong base of words for more to follow… Use your words, use your words, use your words…

The assumption that her spoken language represented her comprehension and intelligence and therefore we needed to push for more was never disputed. This idea of a developmental delay bled into every single aspect of her being. It was believed that her speech was delayed, as were her fine and gross motor skills. Therapies were structured around this concept. All held the promise that if we did intensive, ongoing therapy she would one day, catch up, particularly if we did this during that brief window of opportunity, before she turned three, and then four, maybe if we were lucky, we hoped, the window would still remain open at five, what about six? At the time we didn’t question any of this. Had we known then that she probably already knew how to read, had we understood that what she said, was not representative of her intelligence or indicative of what she understood or knew, if we’d known that autism was not a developmental delay, but rather a “different road entirely”, it would have changed the path we proceeded down.

As it was, we did not know. We listened to the many professionals we consulted. Well meaning professionals, often incredibly kind and thoughtful, a few even brilliant, but none, not a single one ever mentioned the concept of a body/mind disconnect or how that might apply to our daughter. It never once occurred to me that maybe, just maybe what she said was not what she intended to say. It did not enter my mind that when she didn’t answer a question it was because she knew the answer, but couldn’t say the words, this thought, this idea was not something I even knew to consider. We would learn about all of this much, much later and when we did hear these ideas, it came from the most unexpected source – our own daughter, Emma. Not only was she the person we least expected to enlighten us, but she did so, not through spoken language, but by typing. Eight years ago, I don’t know that I would have believed any of this, let alone that Emma would write about all of this in such detail, as she has in these posts:

Parents who are just getting a diagnosis for their young children have so many more resources available to them than we had in 2004. The most important being, blogs written by Autistic people of all ages, non-speakers, speakers, semi-speakers and everyone in between. It is the writings and friendships I now am fortunate enough to enjoy, that have helped me more than anything else. One day I hope the professionals parents are introduced to will be Autistic professionals.

My friend Bridget of the blog, It’s Bridget’s Word said to me, “The ‘delay’ concept is a trap. Development is not linear no matter how many folk whose livelihood depends on timetables try to make it.”

My friend Ibby, educator and author of the blog, Tiny Grace Notes, who is like family to me, said, “Speaking now as an education professor: “developmental delay” is an actual category under the IDEA which is not allowed to be used after the age of eight. The purpose of it was to give people with conditions in which they might “catch up” a chance to do so, and the doctors more time to pinpoint their diagnostics if not. If you look at the lists for most states of what conditions might cause “developmental delay” to be diagnosed before age 5 (as it has to be in most states) it makes some sense as being this sort of thing. Autism is not a “delay” but a condition causing atypical (as opposed to delayed but still on the same track of typical) development.”

Ibby added, “In short, this is not only dangerous and unhelpful but technically ignorant even if separated from the consequences.”

So what are the consequences of believing autism is a developmental delay?

Well, for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal). It meant pursuing all kinds of therapies that never questioned the push for spoken language. It meant not considering AAC devices, because she “had language.” It meant encouraging my daughter to “use your words.” It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught. It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.

There are so many things Emma can do, that I cannot. Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it. My daughter amazes me every, single day. As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!

45 responses to “Autism ≠ Developmental Delay”

Reblogged this on TAG and commented:
Rather than talking about autism as “developmental delay” – an educational category under the IDEA which can apply to children until they’re eight years old – autism is a lifelong, developmental difference: “A different road entirely.” We have to reconsider the ways we talk about autism, because how we talk about autism affects both autistic people and people who love them in ways that are insidious, powerful, and pervasive.

Another great post, Ariane! I agree with you about discarding the deficit-based model of autism. Attempting to judge autistic people by the same criteria as neurotypicals does neither group any favors. There’s more I want to say about the inferences researchers and medical professionals draw based solely on observation and comparison against the norm, but I seem to have a log-jam in my verbal fluency.

Actively rejecting the idea that being autistic involves developmental delay (rather than developmental difference), opens up all sorts of fruitful envisioning; envisioning that may be challenging to articulate perspectively and discursively.
The scale and weight of that challenge can see a young and developing Emma silenced or choosing silence. Winning through to discursive articulation then clearing obstruction to development . Development on a differing pathway then held open in seeing that articulation sustained and grown.
The dynamic, it attaching to collective process, which saw Emma oppressed and suppressed, then continues to operate and have effect. Collective process continues to proceed in a manner which ends silencing individuals across obstruction of articulation of the sensing and thinking of these individuals.
The autistic has a beginning; has a beginning in interaction and intersubjectivity. When a contextualising collective process makes it too difficult or not possible for you to put your sensing and thinking into perspective, such that it cannot be communicated to contextualising others; then the autistic is born.
What this generation of autistic activism is securing, is autistic voicing, is speaking out of and about and despite that circumstancing by collective process.
If being silenced by the weight of obstructing placed in your way by collective process is the problem or dilemma with the autistic, voicing is solution or redress. The dynamic of silencing then bears on everyone, in all moments of occurring, at all moments in developing; and only sustained countervailing of this silencing dynamic will then do.
Being silenced in an early stage of development may have been dramatically demonstrated by Emma. What is involved in emerging from so being silenced may again be being dramatically demonstrated by Emma. I think the point I want to make is that, in my own autistically characterised occurring, the dynamic which threatens ending being silenced, has never gone away, remains as onerous as ever, constantly threatens to reimpose silencing.
I’d never really personally questioned the idea of developmental delay. Having it questioned as in this blog-post does, has opened me to rich inchoate envisioning. The thing being that this envisioning remains inchoate in character. Taking perspective on this envisioning to significant others who contextualise my occurring, will be a fundamental challenge; a challenge likely to see me fail time and again. Fail because of the conditions that contextualising collective process sets on communication.
If you’re young and Emma, and incipient or attempted communication repeatedly fails, then you may choose silence for a developmental moment, and may so choose for all sorts of developmentally wise reasons. The calculus in this may change when you are a hardened adult, but the collectively-grounded silencing-dynamic remains constant.

Sustained and successful autistic voicing is positioned to constantly refresh the collective project; and is positioned to do so because being autistic is to be in touch with what can be sensed as beyond the hermetic envelope of that collective project. The challenge in taking this resource back to the collective, is negotiating all that threatens to see you silenced. That challenge never diminishing for the autistically positioned and presenting person.

Omg thank you Emma for validating a theory (from the autistic perspective) i presented a while back (when I still blogged occasionally lol) on this post http://oppositeendsblog.wordpress.com/2014/04/09/317/
“Everyone gets so caught up in test and assessment scores. Parents of autistic kids are often devastated by their results (my aspie excelled at them until writing got involved). I think the underlying problem is they are assumed to be traveling more slowly down the standard developmental path…well duh their brains are wired differently. My contention is that theyre where they are supposed to be ON A TOTALLY DIFFERENT PATH so measuring against people on the standard path is completely pointless, bc they’re not going that particular direction! The two intersect and merge at different points, but are not the same. It’s our choice whether to keep ourselves and kids miserably pushing down the wrong path or embrace hopping over to the right one and cheering them on wherever it may lead.”

But hey…I learned from the best including Emma and all those mentioned above 🙂

I think the testing terms like “developmental age” or “age equivalency” should be abolished. People with autism learn differently, and are often not good vicarious learners for some things like writing or social skills. This doesn’t mean one cannot learn something though, but it will require a lot of teaching and direct instruction.

The next problem is that a person with autism’s profile is often not a straight line. We often make assumptions that the child should have to master all tasks of a certain age equilavency before going on to new ones. This is also a myth because many times a person could excel in some areas and struggle in others. These tests only test a small number of skills.

Lastly, only believing the adults is another common mistake. Sometimes the kid knows more and isn’t allowed to share what they know. Sometimes indirectly assesed tests also mistake “not wanting to” from “the child doesn’t know the steps” too.

“We often make assumptions that the child should have to master all tasks of a certain age equilavency before going on to new ones. ” oh don’t get me started lol my almost 5yo can spell dinosaur but still doesn’t greet or wave bye bye luckily he had therapists that knew when to just move on or we’d still be stuck there.

What you need to teach your 5 year old is how to greet and the rules for when to greet. As a person with autism myself, I had to learn these rules one environment at a time, and did not generalize the rules from one to another. I am currently writing a book on the social challenges of having autism. There were so many skills I didn’t understand, and somet things I took very literal and didn’t understand exceptions to rules. Feel free to ask me any questions (stephen@stephen-hinkle.com)

Stephen, you speak to an important topic. We then find, even if we only consider an autistic community, a diversity of views on that topic. Those with differing views then having their own good reasons for them. Some autistically characterised persons committing to rules, and some not. I personally find the use others make of greeting, quite problematic: I fit in with the demands imposed by that greeting; but I only do it to get by. I can understand and be supportive of the various reasons some autistically presenting children have, to not themselves greet or respond to the greeting of others.
I tend to think about this reluctance to greet or be greeted, as associated with the nexus of circumstance which sees autistic persons silenced or choosing to be silent. Sometimes the social imposes conditions or makes demands, that means that autistic voicing would be so compromised in negotiating these conditions or demands, that silence or other null-activity proves the best means of preserving the integrity of the autistic person.
Rule discernment and rule following is one way for an autistic person to seek to fit-in with a socialised grouping of others. It is not then the only path open to being taken by an autistic person. The older I get, and the more understanding of the social I glean, the more determined I am to be autistic and tread the different pathway of autistic development that Emma and Ariane and others are speaking to. On that pathway rules do not figure much; more a constant reliance on holistic personal sensing and judgement.
I’m grateful to you for stimulating these thoughts in me.

Yes at some point he’ll need to at least have need to have knowledge of what other people expect of him as far as social niceties, but at his age I feel there are so many more things to master first like communicating if he is sick or hurt or his shoes are bothering him. My point I was trying to make was making him stay on a goal until he learns it before he can move on. For example because he still doesn’t wave bye bye on command. . Or ever… assuming he’s not ready to move on to learning the alphabet (which he’s known from at least 2 when bye bye was still on his goal list) does that clarify a little better?

Reblogged this on Sonnolenta… A Neurodivergent Journey and commented:
Another beautiful blog post from Emma and Ariane. A MUST-READ for parents of Autistic children, especially any parent whose child has been recently diagnosed!

“There are so many things Emma can do, that I cannot. Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it. My daughter amazes me every, single day. As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!”

There are those of us on the spectrum who have come quite late to understanding why oral interaction has been hard or sometimes impossible most of our lives. that’s MY only delay – I developed just fine in my own way, thank you very much, as my son is doing…This blog has helped me understand these aspects of my son and me for some time now.

As always, beautiful advocacy.

And Ariane, mother to mother, – if you were STILL engaging in such “therapies,” with what you now know, THAT would be something to regret but it is abundantly clear that you have always acted only from LOVE.

Thank you so much for this. My son’s autism diagnosis came with a side order of DD. I was confused and troubled by this, and decided to ignore it. This has really clarified things for me. Thank you. Important stuff.
Ariane, Emma, Richard, would you please write a book? Write one each! I know you are busy people, but the world needs to hear more of this.

Wonderful post, wish I’d read it ten years ago. The next generation of parents will have much more help in understanding autism than we did, and you’re contributing to that. Thanks for this and amen to that last sentence!

Ariane and Emma, I have read your posts now off and on over the past 6 months. You are inspiring and Emma you are a very strong amazing young lady.
Here is my dilemma……my daughter is 15 and has no real diagnosis and subsequently has many diagnosis’ from autism to mild CP to Moderate Mental Retardation, Developmental Delay to possible Angelman Syndrome (with no genetic link) etc….. She has some language but is often unintelligible. I often feel she knows what she means to say but it doesn’t come out the way she intended. She will often says someone else’s name even though I know she knows the person she is speaking about. We have tried many modes of communication – AAC, sign language, gestures, etc. – including trying to teach her letters, words, and the use of a letter board. She is very clear in her communication that she is not interested in these things. She loves music…..I mean truly loves it! She loves people and loves humor and is quite humorous. She loves to laugh and wants to make others laugh. It is through her humor that I realize her cognitive abilities are underestimated.
My next question is for Emma…..did you know you could write but chose not too because it was so difficult? And if so, what was needed in order for you to be able to write through the letter board? What did you need to have in place for your from others to have the courage, determination, etc to show others your abilities? I guess what I am asking is if there is one thing you wish others would have known about how to help you communicate with them, what would it be?
Thank you so much for your posts and your insights. We are so grateful for your willingness to open up with us.

Hi Jeannie – this is what Emma wrote in response to your questions – “I was able to read and write many years before anyone realized. Choosing not to do something is not my experience. I needed belief in me, trust, safety and patience while being supported as I tried. Soma and RPM was what finally changed everything.”

Emma had begun writing prior to our seeing Soma, but it was Soma’s method that I was finally able to replicate and as a result Emma was able to write with me and does so every day. This has made all the difference in the world.

I totally agree about dropping the ‘developmental delay’ label and also accepting that autism is another road entirely. What has me puzzled about this post is mentioning Greenspan and developmental delay in the same post. I don’t think he was a proponent of the theory that autism was synonymous with developmental delay. In fact, his intervention intervenes at the level of supporting a child’s individual road of development. Maybe you are pointing out that Greenspan’s DIR/Floortime did not ‘work’ with Emma, at least not the way Rapid Prompting did. Well, the whole point of DIR/Floortime is that each child must be supported in a totally ‘individualized’ way. No professional can honestly say which intervention is going to work with which child; we honestly do not know.

So I am asking: What was in the video that you watched that was so awful?

As I wrote right in the beginning of the post – “This post is not about Stanley Greenspan or his method. His name is brought up only because of the video that inspired this post.”
So in answer to your question regarding what was so awful (and I thought this was clear in the post) – Me. I was making all sorts of assumptions that, as it turns out, were completely incorrect. It was extremely painful to watch.

Ariane, you bring up such an important point here. The role of motor differences (dyspraxia and apraxia) and how if these differences are not taken into consideration, the child (or adult) can be completely misunderstood. I have heard from researchers that believe that autism is primarily a difference in sensory/motor functioning which would support your idea that autism is not a developmental delay, but a major difference in the way the brain is wired up (including spoken language). This should give all therapists (and parents) something to think about in terms of treatment that take behaviors at face value in ASD.

autism isn’t a development delay, people tend to think so because many non-verbal autistic kids find their voice later.

I used to be selectively mute until age nine. but autistic children learn talking, interacting, reading facial expressions etc by experience. a five year old doesnt have this experience because he hasnt been around long enough.

This post and commenters make many good points about the dangers of mistakenly applying a linear model of development to anyone, autistic or not.

I would throw in a word of caution, however. I read a lot of pop-neuroscience and sometimes even original research papers, though I have no training in the field. I’ve also participated in many research studies, and talked with academics who are at the cutting edge. One of my takeaways from all of this is that the autistic brain does take longer to develop. And I have seen some research that suggests that autistic kids may develop certain skills at a slightly later age than neurotypical kids.

In my view, this may introduce a huge bias into a lot of studies that have been done, in which autistic kids are measured doing this or that, compared with a “control” group of NT children who are matched for, among other things, age. Calendar ages may not be comparable, and if autistic brains do develop more slowly in some areas, some of the “deficits” in autism may be simply a different pace of maturation.

But it isn’t just kids. The prefrontal cortex is one of the last areas of any brain to mature, and it may take even longer in autistic brains. This is the area of the brain that houses many of the so-called executive functions, which many autistic people have trouble with.

I could say a lot more, but you get my drift. Although I would also characterize autistic development as “different” and not “delayed” part of that difference may include slower development in some areas. And perhaps more rapid development in others. I think of Hans Asperger and his “little professors.”

In any case, even if some things develop more slowly, the end result is worth waiting for. The autistic brain may take longer to mature because it is, in some areas, a more complex system than the NT brain. This doesn’t mean the autistic brain is superior, because there are tradeoffs. The Intense World Theory of Autism and all that. We are different. Better at some things, more challenged in others. I love my autistic brain.

Hi Michael,
The way in which the Autistic brain develops versus a non autistic brain is still largely viewed as one of deficiency or “inferior” whether that view is taken by scientists doing the research or by those who are “reporting” the results. This skewed view infiltrates everything. I have yet to see an unbiased research paper or for that matter any research done that expounds upon the beauty and sheer extraordinariness of any Autistic person’s brain without tempering the findings with a very loud “but”.
“Splinter skills” is a perfect example of this. Instead of saying – this child is massively advanced in ________, the more commonly heard phrasing is, well this child has a splinter skill, we see that with autism.
But where is the research that looks at all those wonderful so called “splinter skills” so that the non autistic population can perhaps learn from those who have a different kind of neurology?
It is an injustice and a disservice to all humans beings, when one group of people is so convinced of their superiority that they cannot see anything positive in another group.
A different road entirely… it’s upon that road I am interested in joining my daughter on.

Michael, you raise a crucial matter, the development of the autistic brain; something I very much reflect on in the individualised working I do educationally with autistically presenting students.
I’m pretty old, and my brain always and currently is working at through autistic brain development. By that I mean that I experience my brain positioning and juggling and straining to have the autistic emotions and thoughts I need to more openly and completely live as an autistically orientated person. The effort is all consuming and progress always marginal; so progression through the aggregation of marginal increments (my favourite idea at the moment).
I focus on what has to be negotiated and transcended, by myself and the students I support, to have emotions and thinking (so very much brain stuff) which sustains and progresses autistic occurring, emotions and thinking which grounds autistic self-realising.
So just what obstructs and slows what I and these students have to do? I would argue that it is the way the collective is socially organised and serving, which so obstructs and slows. Things are arranged for a social quourum; and an autistic constituency has to make do as best can of with the circumstance that leaves them in. Everything parses the autistic in deficit terms. No repository autistic-specific resource is collectively signposted.

Our school (in the UK) has started on the pathway to securing National Autistic Society accreditation.
The chap telling us about what is involved in this, spoke passionately about putting an “autism spin” on everything. He spoke about how what sees School’s regulated, so often lacks this autism-specific spin; where what these regulating agencies demand then has to be challenged and augmented for autistic benefit.
I asked him in his whole-staff address, as to whether his autism-informed challenging of the regulating powers that be, could be associated with how the autistic brain has to be allowed to work. He lit up and hiked his passion a gear or two. We have to stop obstructing the autistically working brain, and we have to do that by putting an autism-spin on everything.

I don’t think that slower autistic-brain development is intrinsic. Rather it is caused, where it is found, by socially-grounded interface with the autistically-grounded individual.

My autistic-brain/autistic-professional development is hindered and obstructed by my colleagues and managers finding my autistic-affirming thinking to be less sound than their own social-affirming thinking.
It’s not safe to ignore such a view of your thinking. It’s not safe to leap too far ahead of how those around you see you. It becomes a self-preserving autistic-specific task to stay in touch with those who do not see you as you really autistically are.
That slows down your developing (brain included); but it keeps you somewhat safe.

Great post. I would urge you not to spend any time feeling guilty though – you were doing the best you could with the information you had at the time. Your daughter said it beautifully, “quiet love was there.”

I agree entirely that today the ability for parents to learn from those who are actually on the spectrum is a huge step forward as is the technology that helps non-verbal people communicate effectively. NO more do we have to make assumptions. Now we can get information directly from those we love.

Reblogged this on bunnyhopscotch and commented:
Such a powerful post! It took me a few weeks to be able to respond with semantic textual coherence. I am 49, and I still feel enshrouded by a heavy ‘straight jacket’ of ‘impairment’ – and spend a lot of my own inner thought life and external expression constantly trying expunge the strongholds. As children, wee are told what we are – deficient – by others who are not us, others who are locked inside their own perceptions and straight jackets of Deficiency – and we weave these insidious threads into the complex tapestries of our beings. But Emma is a light shining in a grim dark place, thank you for your insights of truth and hope!

this is much needed food for thought. i will read and reread both the post and the comments for some time to come. thank you for thinking about how things look from our perspective. having been raised in an environment were this was akin to suicide i do not know how to think or word things from my own perspective. blog posts like this are so much needed to uncover the personality i needed to kill at one point. lets hope its not beyond resurrection. thank you for sharing your thoughts!

My son was also labeled as DD upon entering kindergarten when the school couldn’t understand why such a bright child was hitting other children. By the time we finally got his autism diagnosis (the same exact time that you mention that IDEA requires a label), the school decided that because there were already “supports” in place (a one-on-one aide, occupational therapist, etc) at school, that changing the DD diagnosis to autism didn’t require any changes on their part.

Sadly, it took me years to realize how wrong they were. He stopped hitting other people, but instead started hitting himself. He stopped yelling at peers but also refused to go into the classroom at all, only unleashing his frustration and anxiety upon his aides and others in the special education department. Simply put, they had no idea what road to steer him on (though he, and we, tried to stimulate ideas about a truly different education path for him, not just attempting to force him to complete the classroom work assignments), so instead he went off the road completely into the worst years of his school life. It was utterly heartbreaking for them to only praise him when he was “good,” i.e. being quiet and utterly miserable.

Fortunately, this year we enrolled him in a small private school where he has had his moments of struggling socially, but because he is in a much more accepting environment (and being an active participant in the way he seeks to learn) he has blossomed into a less stressed and happier adolescent. The teacher at that school knows that what he needs the most are not times tables or worksheets, but to engage with children and to engage in LEARNING, something he was completely unable to access under his old school’s plan. He literally begged us to let him attend this school after we went for a visit, so I am relieved that it is (at last!) what he truly wants.

In all of this, I received my own autism diagnosis after I recognized many of my childhood struggles in my son’s eyes. But only because I didn’t hit other children when I was a child, I silently slipped through the cracks and barely made it through school with my soul intact. The point of this long comment is to thank Emma for her unending patience with you, as I often thank my son for his unending patience with me. As far as regret goes, we can only regret for so long. I see my son being able to regard school as a safer place, working to engage with others and discover who he is as a person. Whether he and I are laughing over a physics-based webcomic or quietly playing a game of Magic, I am grateful that this change has come into both our lives.

At the same time, I wish that the public school he was in could have seen that he required much more than what they thought was merely erasing one label and putting in another to fulfill IDEA. There are tons of children that this will affect and I don’t wish that upon them or their parents.

Wow, this one made me cry. “Use your words” a phrase so full of frustration and anxiety for me… I felt so trapped. I communicate reasonably well in type, but to this day I find spoken communication a source of anxiety, especially when people don’t understand my first try, so frustrating. Going to resist the temptation to go on about my own experiences, and just say thank you for sharing this.

Well said. The problem with “delay” is that it is pejorative. Delay implies the skill will come at some point. That will be true for some kids, but not for all. Either way, you are correct that it vastly underestimates what the future may or can hold. This is where we need to promote the social model of disability and get that into the medical mainstream. The labels are very helpful for services; really detrimental in terms of expectation. Expectation, hope, understanding….they are key elements in appreciating what autistics bring to us. What they seriously bring in terms of brain power. Not just some feel good charity thing….